Search results

Thank you Physios with ME. This is very useful.

I have tried IVIG and Imunovir. Neither had any long term benefits that I could see. The Imunovir did seem to have a good effect on my swollen glands and sore thoats for a while but then seemed to wear off. I had forgotten about this. The IVIG did nothing obvious that I could see. IGIM was...

I wonder how many of them developed OI or POTs and if so, for how long? It's something I was told when seeing Cardiologists re: POTS or low BP. Was told being bedbound for ME was causing this.

One advantage of a TV drama is that we don't seem to need to apply 'balance' as per a documentary or a news item. There are plenty of people with ME we could make a dramatisation of showing how we were harmed over exercise as an example. The TV drama used the Fraser judgement as a positive...

I met a few people at DWP Tribunal level who were downright malevolent. Including the token 'disabled person' and a lawyer. Been assessed by a GP who shouldn't be allowed contact with anyone vulnerable. The PO attracted some of these types (from watching them at the Inquiry).

The only dramas that spring to mind are 'wide eyed and legless' and the episodes of 'the golden girls'.

I have been listening to the Post Office Inquiry which shows proceedings on their website and YouTube. Initially I was struck by how the Post Office employees who testifying were like NHS and benefits staff I have met along the way. Indoctrinated into the (PO) culture, unwilling to look at...

But replaced with the LC version of CBT/ GE which is breathing exercises with a Respiratory Nurse My LC refers everyone to her and she diagnoses every single person with 'disordered breathing'. Then she sees them for x number of months. The Respiratory Nurse had no experience in this area pre...

I think that was probably by Prof Peter Behan from memory or Prof Wilhelmina Behan https://me-pedia.org/wiki/Peter_Behan https://bdiap.org/wilhelmina_behan.aspx

Or having to move somewhere cheaper to live?

There is the UK Yellow card reporting scheme. I completed one for the adverse reactions I had to the AZ vaccine. A research group could take one of the categories there and look at the individual reports and investigate. They could narrow it down to reports with medical evidence from doctors...

I guess it is a start, in the same way people with LC began to try and find a name for the symptoms that they had and to collect data. LC people started by self diagnosing and joining together to try and understand what was happening to them. My own problems with ongoing head and eye pain...

https://covid19.public-inquiry.uk/wp-content/uploads/2023/10/13181626/C-19-Inquiry-13-October-Module-2-Day-9.pdf Starts round about page 81

I listened off and on as I could and felt as if it was largely that ME had never existed. There were references to CFS, Chronic fatigue. The criteria for CFS was said to be the CDC one. PEM was mentioned but with fatigue as the primary mention. To be fair none of these people were pretending...

Long Covid at the UK Covid Inquiry today Starts sometime between 10am to 1pm with Prof Chris Brightling and Dr Rachel Evans then after 2pm Ondine Sherwood. Available on YouTube plus I think on their website...

My experience is that it's hard to find a lawyer for a medical negligence claim. Then the money for expert witnesses. No win/no fee lawyers aren't interested. Some legal expenses cover (like the cover sold with household insurance) doesn't always cover medical negligence and those that still...

Thank you for posting. That was a really interesting read. Computer weekly also do great reporting on the Post Office scandal

Signed

How would they prove that it was a reduced ability to run?

My LC Clinic refers everyone to a respiratory physio. She diagnoses every single person with a disordered breathing pattern and gives them exercises to do. She told me this. I went along with this initially to see what would happen. The diagnosis was done by Zoom call. She does see some...